It’s hard to know the right thing to say when you have not experienced a situation yourself. And even when you have, everyones experience is so personal and different. Please don’t feel bad if you recognise having said similar things to someone. I believe most comments just come from not knowing what to say, or nervousness, most people mean well. Thats why I have shared there comments I found really unhelpful to hear, in the hope it helps you know what to avoid saying.

These comments were the minority, we were incredibly fortunate to have some really special people around us, and I will never forget and be forever thankful for their support.

“Oh that’s not that early”

This was possibly one of the most hurtful comments. Belittling all she went through, and all our pain too. Yes I do appreciate that she could have been born earlier, and I am incredibly thankful she wasn’t. However, this comment doesn’t come from the Parents of micro premmies born at 23 weeks. Parent who have spent far longer in hospital than us, and who’s babies experienced extensive medical treatment. Nor does it come from people who know little about babies and just see that thirty ish weeks isn’t that far off forty. It has typically come from Women, of full term babies who were home within a couple of days. Yes I appreciate she could’ve mean earlier, or so early she didn’t survive, or could have not been conceived at all, but this isn’t a competition, no single person has the monopoly on pain, so please do not judge mine.

“You’re lucky you don’t have to get woken at night with her being in hospital”

Do you know what I would give to be woken by my baby crying? Instead I am woken by my alarm to attach to the breast pump every couple of hours, by the sense of emptiness in my still present baby bump. Or I am not sleeping at all for days on end because I am by her bedside watching a procedure or awaiting results.

“You’re lucky you didn’t get to full term it’s so hard”

Again, do you know what I would have given to be over due? To have carried her for the full nine months? To have been getting impatient, watching the day tick past, to have experienced going into a Labour at home.

“You should just be grateful she survived”

Do you think I am not grateful? Of course we are eternally grateful that she is here, and now we are a couple of years from her birth, gratitude is what has prevailed. However, this does not override the grief, the anger, the terror. It takes time to work through those emotions, and they are all valid and worthy of that time.

“You’re home now, you should forget all about it”

Don’t you think we would love to? To walk through the front door at home and go back in time. But we are changed people. Don’t you think I would rather do without the nightmares, the constant flashbacks, the crippling anxiety. Just because a baby goes home, things are not magically fixed, as much as everyone would like them to be. Often Parents can only begin to deal with the experience post trauma, as the time in hospital is just survival.

“Can I hold her”

I would love to have felt like a “normal mum” who could pass her around to family and friends for a cuddle, and share in the joy of her. However I had a lot of lost time to make up for, two months she should’ve still been carried inside me, and then all those newborn hugs when instead she lay in a plastic box and I had to ask permission to touch her. I avoided seeing people because I hated being put on the spot about thing. I was too scared to explain myself, so just further isolated myself, the worst possible thing I could have done. I am terrified she doesn’t know who her Mother is, terrified she will get an infection and be taken back to hospital away from us again. So please, wait to be asked, and give me some time, it won’t be any less special first cuddles if you wait.

I will be writing a follow up post about things which were hugely helpful, and how I would try to support a Parent in our position.